Upset and furious

[BlueDevil]

Without going into too much detail, I got THE call yesterday morning at 6AM. I had to make a decision in a very short amount of time -- I was allowed 10 minutes -- and I decided not to take this particular heart. I made this decision on the basis that I wasn't physically where I needed to be. I haven't lost the 10-15 lbs. I've been required to lose or finished the dental work I need. My last follow-up showed that there was no change in my condition, and I generally feel pretty well most of the time. So, I decided to pass on this heart. Trust me, this was totally not on my radar; I've only been on the list for 3 months. I felt confident that I made the right decision.

However, I am so upset and furious right now I don't even know where to begin.

Neither my partner nor I particularly care for the transplant coordinator who is handling my case. I don't think we have much choice in the matter, as I believe she is the only one there.

After the events of yesterday, I made a mental note to call her this morning and talk to her about them, but she beat me to it and called me earlier.

Her first words to me: "What happened? We had an excellent heart for you and it cross-matched perfectly. Why didn't you take it?" Her tone put me on the defensive, and the conversation went downhill from there.

When we saw my doctor at the end of February, we asked her specific questions about the logistics of the transplant, and we have been working under these parameters:

1. I must lose 10-15 lbs.
2. I must have any major dental work taken care of beforehand.
3. Because of the serious nature of transplantation, it is best to put it off for as long as possible.

I said that I made an informed decision and the best one I could make given the parameters SHE and my doctor provided. Further, I hadn't been told that I cross-matched perfectly. Whether that would have made a difference in my decision, I don't know and I can't speculate. All I know is that we asked my doctor about the antibody issue last month, and she said that I could run into a situation where I would be rejected upon arrival at the hospital because I would not cross-match with the donor. I had no idea they did this ahead of time.

The coordinator negated 1 and 2, more or less telling me that it would be ideal to have both of those taken care of, but it wasn't necessary. As far as #3 goes, nobody has communicated to us that I am at the point where I would be better off at this time in taking the new heart. All indications have told us otherwise, and no medical professional has contradicted that. Given that I generally feel OK a majority of the time and there was no change in my condition when I saw the doctor last month, nobody has told us otherwise.

I felt like I was being attacked for making the decision I made, and I told her as much. I was actually proud of myself in a way because I am generally a wuss but I didn't back down this time.

I have been moved to Status 7. I understand the wisdom of this, I really do. I would rather someone get the heart who needs it, and I hope someone got the one I rejected yesterday.

But I draw the line at being attacked by a person who is supposed to be helping me. My partner called and spoke with her and backed me up on everything, adding his own thoughts to the mix. He's trying to reassure me that we're no worse off today than we were yesterday, but damned if I am not having major second thoughts right now.

I have not been this stressed ever in my life. On top of the events from yesterday, we are undergoing a heavy winter storm here in MN right now, and I white-knuckled it all the way to work.

I am trying to see the light at the end of the tunnel on this, but for now I am just furious.

[Reenie]

Oh boy. I can't understand why the transplant coordinator would put you on the defensive like that. My suggestion would be to go to your doctor and relay the entire event to him. When we had trouble with my mom's stem cell transplant coordinator we just circumvented her until she understood what we needed and how to handle delicate situations for us. I know that stem cell transplants and heart transplants are different, but you still have to have the same degree of match, cross-matching, etc. For what it's worth, I'm on your side too. At the least she could have been more tactful.

Reenie

[BlueDevil]

Oh boy. I can't understand why the transplant coordinator would put you on the defensive like that.

Interestingly, one of the first things she said to Steve was that perhaps she could have handled this call differently than she did. But this is just one in a number of things that have happened along the way.

Regardless, I do not like the woman -- neither of us do -- and I'm looking into whether someone else can handle my case. I think, however, that we're stuck with her.

[karen cicconetti]

I am so sorry you had such a bad time with all this. I had my transplant 8 years ago and that was right for me, everyone has the right to decide if they want a transplant or not. I know many people who have turned hearts away for what ever reason they had. Most have gone on and got transplanted some didn't. As far as coordinators go most hospitals have more then one but I'm sure she has seen this more then once. As a defense for her when they get a heart that is a match for one of their patients they go through a million emotions knowing that one more person has a second chance of life. She should have expressed herself better and nicier and you should have known ALL aspects of the matching process. I hope you don't give up on transplant all together because of one person. Don't ever second guess yourself you made the right choice for you at the time.If I can help any way let me know.
God Bless and stay well.

Karen

[NoCrash]

Tim,

I will chime in with Karen and say don't go second-guessing yourself, you did what was right for you at the moment. You just weren't ripe enough for the transplant, yet. (I'm worried about being over-ripe before my call comes.)

Hang-in,
Rob

[Midge Rollins]

I am sorry you are having such a time. I think the coordinator should have been preparing you that your heart could come at any time. I am not sure you have had enough pre transplant education and I really suggest you talk to your Dr. If you were not high on the list it is interesting you would get the call at that status. Please talk to your physician so you can get these matters straightened out and get the education you deserve for this life changing surgery.

[shirleymahoney]

well to tell you the truth here in Va my dr. won't even consider doing a transplant on me until I have problems getting in the shower then he said to call him, Tim I hope you get this worked out and please don't let this stress you your body doesn't need it You take care

Shirley

[jmurray]

Hang in there! only YOU can make the decisions that are right for YOU (with your partners support of course)

I hope you can work things out with this coordinator or possibly get a new one. Remember we are all here for you!

Best to you,

John

[BlueDevil]

Thanks so much for the responses, everyone. It has, understandably, been a very stressful week. I rarely speak in terms of absolutes, but I have to say that Monday is quite possibly the worst day I've ever experienced in my entire life. The fact that I am quite literally alone at home at the moment (my partner is on a work assignment in California and has been since late September) made it all even difficult.

There is some positive news, though. I've been making some calls, and it seems there is some thought that I shouldn't have progressed in the transplant system this quickly. We are all going to be meeting on the subject at some point in the near future. It's clear that not all of us are on the same page, and in a way I find that sort of alarming. After my conversation, I felt cautiously encouraged about making the decision on Sunday.

-- T.

[Linda]

A group meeting sounds like a real good idea - I hope it happens soon. This stewing over what could have or should have, etc is no good for anyone. I hope your partner is soon home and you get a clear picture of the whole thing. Please keep us posted - best wishes - LInda

[Pam Alexson]

Tim ,

I am sorry you have had to go through this , hope all is soon resolved and the plan is better for you.

Pam

[dreamcatchinglady]

I agree with Linda on that a group meeting is a great idea. That transplant coordinator could have been kinder. You'll know when the right time is for you to get your heart. I got mine on October 1st last year after waiting over a year and I look at the world more differently now. I appreciate life more. It is such a gift.Keep your chin up and stay positive. Blessings always and Best wishes.